MRI results lead time? Diaphragm endo removal?

[YellowWarrior]

I had an MRI in the middle of September after my laparoscopy discovered stage 4 endo on my bowel in two places and my diaphragm. I haven’t had my results back yet, and have no follow up appointment booked with my consultant. I don’t really know what I’m supposed to be waiting for or how long, has anyone had a similar cycle of events?

Also, has anyone had diaphragmatic endo removed? I’m quite concerned about it being there and it causes shoulder pain and difficulty breathing (which I never knew was all because of this, I just always thought it was a stress thing maybe), but my consultant said it’s too close to my heart to operate on. Doesn’t really make sense to me though since we literally have heart surgeons, do you think she just meant that she couldn’t remove it because of that?

I know my next surgery is going to be a duo surgery with a bowel surgeon as they need to remove part of my bowel and resection it (which is what the MRI was for, to help them figure out what needed doing in the surgery) but I’m just a bit lost really.

My GP was amazing so should I just go back to him to see if he has access to any answers? I’m just so scared about being let down by my consultant, I don’t want my good luck with that side of things to run out really.

[Jltdance]

Hello, just a few questions as I think I may have endo on my diaphragm. Are you extremely ill with this and find it hard to work?

[YellowWarrior]

No endo centre, just Royal Hampshire hospital

[StefaniaJW]

An MRI after surgery is quite pointless. Either the surgery removed all endo effectively and you're not in pain anymore or it didn't and you'll need another surgery. There isn't much choice here.

Endometriosis on the diaphragm can absolutely be operated on, but you need an extremely skilled and specialised surgeon. You might need a team of surgeons to assist him/her during surgery in case of bowel, nerves, urethers and bladder involvement.

Did you get surgery at a bsge centre or with an extremely skilled excision surgeon? If you didn't, PM me to get names.

[YellowWarrior in reply to StefaniaJW]

No maybe I wasn’t clear sorry, I had my laparoscopy but they didn’t remove anything because it was too thick for them to do in that type of surgery so it ended up just being purely diagnostic. That’s why they sent me for the MRI so they can plan my bowel resection surgery appropriately.

I’ve read some stuff and seems like diaphragm is only ever operated on in extreme cases, it seems too rare to get a full scope of info on really.

[StefaniaJW in reply to YellowWarrior]

I am very sorry but if they didn't remove anything because it was too thick for them, they clearly were not specialists and therefore cannot help you.

If you want names of extremely skilled excision surgeons in the UK, even surgeons who work with diaphragm endo, please PM me.